Aftershocks (#246)

It is said that it is an earthquake‘s aftershocks are the most dangerous, and wreak the most havoc, the real tragedy.

Tragedy has come to mean “something really, really terrible happening” like Hurricane Katrina or other disaster, natural or human-made. Some, not including myself, think that autism itself is a tragedy. Jim and I love the difference that autism, and Charlie, make, yet it is Charlie’s very neurological difference that has resulted in some pretty awful suffering.
It’s an autism paradox, something that seems contradictory yet may be true; something that seems self-contradictory.

“Charlie’s school is closing at the end of June.” This statement, which I know is true, seems more impossible everytime I read it. Because of the severe shortage of quality placements and qualified programs for autistic children. Because today Charlie got on and off the bus with a big smile, pulled himself through a frustrating moment in his reading program in his home ABA session, followed me around Walgreens with no interest in getting a “clear drink,” told me on his own “I want eat spring rolls” and “give da yallo bowl!” and “Mommy, want Kristy photos, yes? Kristy photo,” laughingly asked me “fold da blankett!” as he prepared to go to bed. Because our day was pleasant, plain and simple:

Life in Autismland should be so easy.

Thank you to everyone who has written to express their shared sadness about Charlie’s school closing. To me, the saddest part stems from Charlie’s obvious fondness for a school he only began to attend in December.

And yet, while the school’s continued existence would be the best thing for Charlie, the school has given him something that has fundamentally changed the course of his young life and so of his future, and so of our small family’s life.

After stumbling on a plateau of “no” and “some” gains in reading, writing, and all of his academics for the past few years, Charlie has been making progress in all of his schoolwork. He is talking more and better. He is more and more interested in other children at school and around our town, his receptive language is amazing, his frustrations decrease every day. Charlie even goes to bed around 9.30pm, after years of “bedtime” at 11pm at the earliest, and grins at the mention of “schoolbus.”

Charlie’s school has turned him around and shown that he can thrive academically, socially, and in so many other ways in the right kind of school environment. It is true that there are not nearly enough autism schools that provide this kind of intense and carefully structured education. It has been clearly established that Charlie thrives in such a setting and, needless to say, Jim and I have already begun to dedicate our every effort to find him a school situation of the same high caliber.

In the classic discussion of tragedy in his Poetics, the ancient Greek philosopher Aristotle writes that tragedy is “the imitation of an action that is serious……….Tragedy is a form of drama exciting the emotions of pity and fear. Its action should be single and complete, presenting a reversal of fortune.” A tragic writer presents “incidents arousing pity and fear” and the audience, in seeing these, experiences katharsis, “ a purging or sweeping away of the pity and fear aroused by the tragic action“. A tragic hero is neither good nor bad and the disasters that occur in Greek tragedy (as Sophocles’ Oedipus Rex and Antigone) occur from a tragic flaw that is often hubris, “excessive pride that causes the hero to ignore a divine warning or to break a moral law.”

Autism, educating our children, doing the best we can for them: What can be more serious? What arouses more “pity and fear” than seeing one’s child in full tantrum mode atop a manhole cover in the Newark train station or at his favorite playground or about a spot of red paint? What is the flaw, the hubris in our society that blithefully ignores the signs our kids give; that this is not right and I am really bored doing the same flashcards over and over; that our kids who have autism are the children left behind?

I feel beyond sad to know that Charlie’s school will close, as sad as I did when we packed up our books and Charlie’s toys and the wedding gifts I had never opened and left St. Paul and then St. Louis where we had two excellent teams of therapists, left jobs and plans for the great unknown. And yet the knowledge that Charlie is learning, and happy about his learning, and happy, fill me with awe. This is not a sad boy but an eager young guy, ready to learn, grow, and be.

Autism is not a tragedy. It’s up to us to keep any more tragedy from shaking up–from shocking–our lovely children’s lives.

Comments

I just read your post of yesterday and today and I am saddened to hear that you and your family must face another transition. Especially since I could really tell from all of your posts how well Charlie is doing at his new school and how hard you and Jim worked to get him there! All the best to you and your family.

Kristina – I’m so sorry to hear about Charlie’s school closing. It breaks my heart to hear of another wonderful place for our children to excel no longer being able to offer those opportunites. Our education system is in for a real shock, real soon. What are they thinking?
I wish you all the luck. I know you will be able to find another great place/person/persons for Charlie. You have such a wonderful and supportive family that will all bond together and make it through this trying time.

Kristina,
This is one of the most lovely posts of yours I have read thus far, yet at the same time quite heartbreaking to know that you and Charlie found a place to meet his needs, bring him peace and happiness and it will be over in June. I simply love the message you are putting out there…you are correct…autism is NOT a tragedy and It is up to US to prevent further suffering and uneccesary tragedy to our friends and children’s lives.